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FARAFARA Cure FA

FARA Energy Ball

The FARA Energy Ball is three days of incredible support for FA research that ultimately funds about 1/3 of FARA’s research budget for the year.

It starts on Thursday night with the FARA/USF scientific symposium to which FARA and USF invite a few of the top FA scientists from around the world to give an update on their latest research. This year the featured speakers were Dr, Mirella Dottori who gave a powerful talk about how stem cells are being used to advance FA research, Dr. Guy Miller from Edison Pharmaceuticals who spoke about the drug development process and how it relates to Edison’s progress with the EPI-743 clinical trial, Dr Helen Puccio who pre-recorded her presentation for us because she was unable to make the trip from France. Dr. Puccio introduced her research on gene therapy last year and she gave a progress update. The last part of the program is dedicated to understanding how FA affects the lives of people so there is a “patient panel” and it consisted of 4 people this year who shared their perspective on living with FA. You can view the entire symposium at FARA’s Facebook page here.

Friday night is the “Patron Party” which is a thank you to all the high level sponsors. This year they held the Patron Party at the Tampa Bay Times Forum, the home of the Tampa Bay Lightning hockey team! The Tampa Bay Lightning are an incredibly strong partner!

Saturday is the BALL! It is held at A La Carte Event Pavilion and every detail is amazing; the decorations, the entertainment, the auction items, and the people. The highlight of the evening is the “Fund a Cure”. The concept is that for $250 you can fund one person in a FA clinical trial for one day. There were 750 people seated, eating dinner, in the ballroom and each couple had an ipod touch from which they could bid. When the auctioneer said go the bid total showed up on 4 jumbotrons around the room and the crowd went nuts. The screens changed between the total and the top 5 tables, and the top 5 individuals for total donations. As the excitement increased, the generous people in that room pushed the total to over $250,000 in 20 minutes!

The silent auction included more than 400 incredible items and the live auction featured adventures and trips that went for as much as $25,000! Initial estimates put the event total at over $1.7 million gross. The FA community is grateful for the support of the Tampa Bay community with their effort to keep research moving forward at an urgent pace.

 

The video below was shown at the Energy Ball. Please take a few minutes to watch.

 

http://www.youtube.com/watch?v=YgQeRzzruEU&feature=youtu.be

Kyle

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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